When Dealing with CMT Symptoms, It’s OK to Improvise

Among the many symptoms of Charcot-Marie-Tooth disease is a decrease in hand dexterity. This crossed my mind a few months ago while I was filling up on gas, and a young lady drove up to me asking if I could help her open her bottle of Sunkist. As I braced for embarrassment, I couldn’t help but think she was asking the worst person around for the task.

In the end, I managed to break the seal and we both went our merry way. However, there are many times when I end up having to ask friends to help me open jars and bottles. Ultimately, that’s fine — my friends are understanding. Nevertheless, every now and then, I can’t help but feel a bit inadequate and disappointed, whether it’s with my grip strength or other CMT symptoms.

I feel a tad embarrassed because, for some reason, our society has deemed that being able to twist the lids off jars is the masculine thing to do. I feel like I stand out because I can take longer to do tasks that may seem simple to others. And in many sports, even in the ones I enjoy, I know I don’t progress as quickly as my peers. However, those of us with CMT learn to cope.

My father and sister, who also have CMT symptoms, including weakness in their hands, manage by having a small collection of tools always at the ready. During one of my more self-disparaging moments, I remember once thinking that my father, my sister, and I must all look pathetic using pliers to unclasp certain buckles on my nephew’s old baby car seat. The “child-proof” buckles proved too much for all of us.

In addition to pliers, we all have a random assortment of clamps, jar openers, and specialized grips for many occasions. A friend once took a photo of one of my jar openers to post on his Facebook with the caption: “The Boyfriend Replacer.”

(Screenshot via Young Lee)

I thought it was a bit funny and maybe a bit embarrassing. But I’m trying to practice mindfulness, and that includes being mindful of my limitations and of the fact that I don’t need to let society’s preconceptions define me.

It is a fact that CMT presents me with challenges some other folks may not need to worry about, such as difficulties associated with fine motor skills. But we live in an age when tools to help overcome these challenges are readily available. It isn’t true that there is nothing I can do to improve myself and challenge societal expectations.

Although I no longer have physical therapy sessions, I can do other things to be proactive and fight for what strength I have. I’ve been keeping a finger strengthener at my desk for the past few weeks. I also try to stay active in the hobbies that help my dexterity, such as piano playing and handwriting exercises.

Reminding myself that it is OK to be different and to rely on tools can be an everyday struggle. But I am learning. I’m trying to find ways to define myself and control my narrative.

(Photo by Young Lee)

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.